are you taking the injections as well?
If not I am on carbo taxol and the pains on that over two or 3 days are awful, taking co codamol takes edge off.xx
I woke up feeling pretty normal today after feeling lethargic the past few days since first EC on Wednesday although my tongue feels gross! I’ve noticed a few stabbing pains under the arm where the three lymph nodes were removed and in the breast where the lump was removed. I liked to think this is the chemo killing off the remaining cancer cells. Then this morning I feel like my lower back is literally about to go!! It went doing Joe Wicks workout during lockdown and it feels exactly like that is about to happen again! So now I’m worried that there’s cancer at the bottom of my spine what with the stabbing pains in the cancer sites! I think I’m getting paranoid!! I had a ct scan which was clear but this is really low down at the back of my pelvis.
Thank you for your words and inspiration Shri
i am just tired iffy tummy one extreme to another on carbo taxol lol but imodium settled down for now.
the pains have been eased with co codamol if anyone else suffers with them
all in all doable and bearable just hard not being able to do much did manage a walk though and supervised my kids playing twister which helped for laughter !
week one nearly down week two her I come good luck all xx
❤️ You’ll help others as they join the threads ❤️❤️ there is love, care, support 24/7 here, we all pass it forward ❤️❤️ just someone reaching out and 👭 you know others understand and just get it, no explanations needed through the 🤣🤣😢😳😲💃🏻💃🏻👭👭❤️❤️ 💕💕✨✨Shi xx
❤️❤️ you have to put yourselves first now for a bit ❤️❤️ if you have any beam me up scotty friends who disappear then don’t worry about it, there will be plenty of others that will come into your life on this journey and strangers kindness with fill your hearts with ❤️ the beam me up scotty friends tend to re-appear once you’ve finished treatments, it happens but you’ve you to think about, stay focused and 👭each other through as you are 👍👍❤️❤️you are all doing amazing even if you’ve blocked bums, loosing hair or slime mouth from chemo 👍👍 Epsom salt baths for bone pain, senna or movicol and crate loads of anosol for botty block and silk pillowcase gentle on bald head and dark nail polish to help preserve nails ❤️❤️💕💕✨✨Shi xx
Hi everyone.... Love reading every ones posts xxx
Got my son to Shave my head even shorter as much of skin head as i could get last night as noticed its coming out in tufts if u touch it or pull it gently.
I know what u mean about family and friends reactions ive felt that too as well like u said marble cake
Im 44 and spent years looking after my mum who passed over in 2010 and my dad who now in a care home....
And my 4 children
Out of interest has anyone read any books by louise hay
Her point of view on this is interesting that we overly care too much for others and busy mothering others type thing.... Actually fits with me... Just curious if anyone else knows of it xxx
Wed my next one... Im stocked up with constipation gear this time 😎⌚👌
May C that’s fab news they can tell your lump is changing already - it’s the news we all want to hear to spur us on and realise why we are doing this💪🏼
Early days for me still as first treatment was only Thursday although 💩 is becoming a bit of an issue 🙏🏼Senna will work! Otherwise not too bad - did my first injection last night ok- nurse warned me that I will get aches and pains from this so we will see. Slept a whole lot better last night thankfully
I haven’t done the cold cap - I say it now but I’m not too bothered about the hair loss ( might change when it’s a reality though!) more worried about eyelashes, eyebrows and nails tbh. I think I’ll be rocking a wig for a while though so I’ve gone for a really good one - I’m not blessed with a face that will suit a pixie cut and I’ve always had mid length hair
I’m 50 btw - had a tough time in my 40s looking after my parents, loosing them etc all normal life stuff but stressful. Turned 50 got a new dream job ( I’d been unhappy in my old job for years) thinking this is it my 50s will be better .. onwards and upwards ..them boom - this happens. Also lost my brother in law to cancer last Xmas ( brain tumour he was 53) so telling my family was tough because their reaction was very much ‘ here we go again’ thinking I’m going the same way - I’ve found people’s reactions hard .., one of the hardest things actually. Sorry ramble over!
Hope everyone has a reasonable weekend - love to all
Happy Saturday to everyone and hope you have a nice weekend.
I had my first EC chemo session on Wednesday. Felt very ropey from 10pm and was wide awake feeling sick until 4am. Felt pretty normal since then though. I think I made the mistake of eating dinner (my chemo finished at 5:00pm and I ate at 7:00pm). I wore the cold cap which surprisingly bearable (I do have thick hair) but am now worried whether it worked properly! There was definitely a slight gap in the top of the cap where it wasn’t the perfect fit so a little nervous re: the hair. I too need to wash it - it’s now 3 days since my session so may do it tomorrow, thinking I’ll just rinse it in the cool bath water If I can navigate the picc line arm cover!
Anyway, sending everyone my best wishes and good luck to everyone gearing up to another treatment next week. I have a week off and then am back 2nd December.
am scared to wash my hair!! Lol
its been 4/5 days now, never go that long without washing. I knew there would be some loss even with cold cap but have a fear it’s all going to come out!!
i had my bloods and Covid yesterday, kinda looking forward to cracking on with my next lot of EC. Means I’m 25% done!!!
Yep, I'm gearing up for EC No 2 on Tuesday. And, in general, pretty pleased at how 'OK' the last few weeks have gone, overall.
I had Covid test on Tues, bloods today, and saw Oncologist.
She agreed the chemo has had an impact on the lump - definitely 'softened' and probably smaller, tho difficult to tell without scans, biopsies, etc, so that's looking good.
We talked about a few side effects from last time, and adjusted the contents of my 'goody bag'. Sounds good, but not so much fun when it just contains anti-sickness meds, mouthwash and laxatives!
Aqua, I'm with you on the hair!! I had a horrible moment last night. Washed my hair and was horrified at the amount of hair loss. I knew I'd loose hair (even with cold capping) but it was a bit of a shock. Another one of those 'oh sh*t, it IS real' moments that this throws at us... Will see what next Tuesday brings. On the up side, I haven't had to pluck any stray eyebrows or chin hairs for at least 10 days...😁
I was due to have a PICC line put in today, but that's been moved to Tues as well. Apparently the PICC can take 2/3 hours, so looks like a long day. Hopefully it'll only be as bad as last time, and with the extra meds, should be slightly better.
Sending lots of virtual hugs to everyone. 🤗🤗🤗
And remember, another one down; another one nearer then end!!
Hi Marble Cake, I too had my first cycle yesterday. I was exhausted when I got back so dozed most of the afternoon. I started to feel a bit icky in the evening. I went to bed about 9.30 and slept through, till about 7,30. I did wake up briefly but went back to sleep fairly quickly.
I'm feeling a bit sicky this morning, so phoned the emergency number at the hospital, only to be told that's normal. I'm still eating ok and drinking lots, no vomiting.
I'm not to worried about losing my hair, only my eyebrows and eyelashes, I've already shaved my head, but might get my husband to do it again as it has grown alot in 3 weeks!
I have been referred to the Macmillan psychologist so should be hearing from them in the next couple of weeks. Im sorry you don't have that where you are, I had therapy last time, which did helped alot. I have been so happy with the treatment I've received this time and last time, I know I'm really lucky as I know others don't get the same.
I'm off now to figure out how to keep my central line dry while I have a shower!🙄🙄
Take care, everyone needs to be kind to themselves too. xx
Hope you all doing ok.
My first chemo on MOnday being doable, was not so much last few days, the aches and pains in my body at night have been not great at all and lack of sleep so taken the last few days off working and just trying to rest. I am on a weekly regime carbo/taxol and have heard the first week with carbo in it is tougher. Fingers crossed easier next week. i cold capped bearable except first ten minutes, but goign to ask how likely hair will remain as got EC after this and dont' fancy 12 weeks of torture for nothing... THe anti sick are keeping me from feeling too sick though and thankfully no more injections until next week.x
Lol I felt like I’d had a hangover for a week too!! And then when I tried to do some work, my fuzzy head just felt like I was pissed! Lol
and I’m a 1976 baby as well x
Just take it a day at a time and be aware of anything that doesn’t feel right
Your team would rather you checked in with them re any concerns than leaving it.
Plenty of fluids, smaller meals/snacks if you aren’t feeling up to much, keep on top of the anti sickness meds
I only had three days of pill popping and have only needed the odd anti sickness pill after day four.
I had some throat swelling/feeling low days 5/6 but started to see/feel an improvement from day 8/9 onwards.
Just see you feel each day and just look after yourself
And everyone else
I was born in 76
Yes gearing up for number 2 like u aqua
To me i felt like id been on a bender with first one.. Is there alcohol in it
I did have a bit of breathlessness and small amount of chest pain.... The sea sickness feeling i didnt like but kept up with the anti sickness meds
And lots water
Suprised i was prettyhungry after couple days
My hair too is coming out a little bit though i have cut it shorter and shaved it a bit... Been bit itchy as well
I had to go back to breast clicnic other day for more biopsies and ulra sound under my armpit as mir scan showing something else in same boob im due back tomorrow for some more.... So thats a bit worrying
Xxxxxx hope every one is doing ok xxxx
👍❤️Marble cake, keep the fluids flowing through 👍👍 if your antisickness meds don’t work ring your unit ❤️💕💕✨✨Shi xx
just back from my first treatment - all went smoothly and they let my hubby too as it was my first one.
Relieved to be home but nervous as to what my body will throw at me over the next few days. A little overwhelmed by the bag of meds ... for someone who never really took anything ( paracetamol at a push) it’s hard to get my head round. How can you go from walking around feeling fine to this🤷🏻♀️ I’m still struggling with this tbh. Anyone here managed to get any counselling? Did it help? my local Macmillan don’t have anyone at the moment who can help.
anyway 1 down 💪🏼 And hopefully it will start to do it’s job... that’s what I’m trying to focus on
And taking it a day at a time... another thing I’m not good at 🤪
How is everyone doing?
Everyone had who their first treatment in first week of November - getting geared up for cycle 2?
I have had a few down days, but generally I have been amazed at how well i have been feeling. not really had any issues for over a week now, and pleasantly surprised.
Under no illusions that it will be like this for the next 7 cycles though!
Oh, and my hair is starting to go now 😞 I did have the cold cap, but quite a bit came out this morning when i was gently combing it, so praying the cold cap does its thing!
Positive thoughts and hugs to everyone xxx
How are you feeling now? I shall be on that regime in the new year, so interested to know what it's like a few days in.
Good luck today don’t forget them BG pants, it’s doable and you’ll be amazed how strong you are 💕💕😘
Thank you Ann, I keep telling myself that I need to pull my big girl pants on! I feel sorry for my husband as I’m sure I’ll be insufferable. I’ve been practicing these past few months and he’s getting on well up to now.
Glad to hear you are through the chemo and well on your way now. My first is tomorrow, hence my insomnia!
good luck with the rest of your treatments.
Thanks for all the lovely comments. Came out last night. Feel alot better.
Have kept food and drink down. So slowly on the up.
I know ill carry on, just hope I'm not sick next time. As a few of you have said I'm so looking forward to spring.
Just taking it a aday at a time, in the hope each one is better.
Hope you are feeling a bit better Ellie. I also went back into hospital 3 days after first chemo. I've had a lot of drug reactions, been pretty poorly and dread future sessions. I think the feeling ill also makes me emotionally lacking in resilience - much more weepy and wet than usual. I could smack my own self round the chops some times.
It is indeed the price of life though. I also looked into all the alternatives - I am a biologist by training so went to the original research - and it's clear that this is the road even if it feels like it's making me sicker in the short term. And you can only have long term consequences if you live long term. I have a daughter - I keep her in my mind whenever I feel like I don't want to take this road - and I do feel that quite a lot. I am not one of those gutsy types who will grit their teeth to anything to survive. part of me would like to just give up. It feels like such a long time too when you are at the start.
But I won't give up. My favourite advice is - you don't have to be brave or strong - you just have to show up. That's me - I am not brave and cheerful about it - but I will do it and one day it will come to an end (my treatment runs to Xmas 2022, chemo, surgery, chemo).
chemo one done another 11 weeks of carbo taxol to do then EC
it was totally doable prob worst bit first ten minutes Of cold cap 🥶. Give you so many drugs felt very spaced out and sleepy with the taxol and the carbo seemed ok. Felt little sicky once but they just told me to take extra anti sickness and had wobbly legs I think that was more cold cap.
been resting and supervised dinner 😂. I am sure it will get harder as I go along feels bit like jet lag at mo
Thanks fir all your advice and Shri for all your knowledge !
Hope everyone had a good day xx
Dear Sandra, my name is Ann and I felt compelled to reply to you, I am jumping in from June chemo starters, I have now finished my chemo, had my op and about to have radiotherapy, I also have 3 weekly targeted therapy infusions for the next 9 months. I remember exactly how you feel, I went through resenting it whilst not admitting to myself that it was the "price of life" and that there was no alternative, well there was but to do nothing could not be an option as I am not ready to die. Getting used to being made to feel lousy on a regular basis so i would finally get better is hard to get your head around. My anger did fade, after about 3 months when I could see a finish to the chemo. This site was my saving grace as I did not, and still have not, told anyone, other than my husband who has looked after me throughout, non of my family or friends know about my cancer as I don't want to be defined by it, so I found much comfort in the words of the other girls on this site, they are the only people who can understand what you are going through, I don't have children and am rather older than you but can still feel your pain. I don't expect to have any long term effects on my health and hopefully you will not either. I'm afraid we just have to grit our teeth and get on with it as women have been doing for centuries. I have no doubt that you have the strength to endure, you can do this, will be thinking of you. With love from aNN
Hi I’m brand new to the forum and feeling totally defeated!
I should have started chemo on Friday last week but they couldn’t find a vein so now having a port fitted in my chest tomorrow with chemo starting Wednesday. That’s not why I feel defeated.
I feel like I’m on a rollercoaster I can’t get off with the only options being the recommended treatment. I’ve looked into lots of alternative treatments but there’s no support for them in the UK and no results to see if they actually work. I’m married with two children and feel overwhelming guilt like I have to do all the treatments for my families sake despite the possible long term effects it has on health.
Jomich take a blanket, I’ve heard others who cold capped have taken blanket and scarf 👍 nothing wrong with taking kitchen sink with you in bag 👍 it helps feel in control a bit 👍 knowing you’ve things to hand you might need, phone/iPad chargers good too 👍😘 look at the bell and tell it you’ll be ringing it soon, it helped focus and when you hear others ringing bell clap if you can we all did and cheered (you might not be able to cheer at the minute) but you can celebrate with them by clapping too 👍👍❤️❤️💕💕✨✨Shi xx
I start chemo tomorrow, feeling nervous but want to get on with it now.
Trying the cold cap to see how get on. I am Triple negative multi focual with auxillary nodes involvemetn so my plan is weekly Carbo/Taxol then EC so the other way round to some of you but similar.
Ellie sorry you have been so poorly that is not nice hope you feel better soon.
My bag I am taking in seems too big but srue I will take less in each time as I get used to it as part of my weekly routine.. Had covid swab Friday negative so all set..
Oh no! hopefully you’ll be home quick after being on IV and feeling not as rough it’s horrible, thinking of you 😘💕💕
I started chemo on 4th Nov, so just ahead of you. I'm on a similar plan - 4 EC (3 weekly) then 4 lots of Paclitaxel/Carboplatin, which should take me up til April. Hoping Spring will be on the way by then too. 😁
I cold capped, and plan to continue. I wasn't sure what to expect, but did look at the Paxman website. Paxman is one of the makers of the cold cap, and is the one I'll be using, they have quite a few videos and info. Might be worth a look for you. Also have a look at https://www.cancerhaircare.co.uk/ for more info.
On a practical note, the nurse that did my treatment fitted the cap and prepped my hair. She tried the three sizes and settled on a medium. I wasn't sure how it was supposed to feel, so got her to check once it'd been on for a while. It didn't feel like it was very fitted on the crown, but a bit difficult to tell because I'm now numb! She seemed to think it was OK, but at the end when I asked again, she suggested I try a large next time! I'm now wondering if I'll end up with 'a fantasy island' of baldness...😉 So....make sure you get a good fit!
The cap does add time to your treatment. 30 mins before the infusions, and then 90 after they've done. And another 10 to wiggle it off at the end.
Nurse soaked my hair with the unit's spray bottle to the point of dripping, which, looking at videos, seemed to be unnecessary. The she put on the conditioner I brought. I think they have conditioner there tho. Unfortunately, she did end up with her hands covered in my red-ish hair dye for her trouble!
I would say the 'freezing' was uncomfortable. As most have said, the first few mins are the worst. The first couple of mins as it was freezing, I wasn't sure I was going to manage it, but I closed my eyes, concentrated on my breathing, and I realised after about 7 mins, it wasn't getting any worse, and it was bearable.
There's no guarantee you'll keep your hair, but my thinking is, it's worth the go. I have a couple of cheap-y wigs just in case, (especially in Lockdown 2.0 no NHS recommended hairdressers/wig shops open) and a few woolly hats. You'll probably need one of those for leaving the unit, as your hair will likely still be wet.
Looking at personal accounts, people say your hair usually starts to go after your second EC. My 2nd is due on 24th Nov, so I'll let you know how it goes.
I felt bad that I was worried about my hair. But I think it's about control. There's so much of this process that is so totally out of my control, and this feels like something that is, even partially within it. And by the amount of posts I see on hair loss, I know it's not just me!
Good luck for Weds, let us know how you go. And remember each one down is one nearer the end. 🤗
i would just go in as normal. I made a fuss of my hair that morning. Full on hair mask the lot. Figured it would be last time in a while.
They had a little spray bottle to wet the hair and a sachet of hair conditioner. I had my own stuff incase
I’m going to ask if I can take some paracetamol before hand for the next session. The first ten mins of cold cap were the worst bit of the whole 4 hrs I was in. But as everyone says, once u crack ten mins it’s pretty much plain sailing from then on
hope everything goes ok for ur first session.
be positive. My best advice
👭❤️Elle, not glad to here you are casa nhs but glad you’ve not left it and got yourself in so they can treat you 👍 try and find out what you neutrophil count is. What day of your cycle are you on now? Are you on weekly or 3 weekly infusion? Keep sipping water 👍 flush everything out 👍😘💕💕✨✨Shi xx
Well I've ended up in hospital. Sickness and nausea. Feel rough as. Giving me IV antisickness and fluids.
Hopefully be home soon.
Hope you’re doing well.
I’m due to start chemo this Wednesday (Accelerated EC fortnightly for 2 months and then weekly Carboplatin/Paclitaxel for 3 months).
I plan to use the cold cap too, how are you getting on with it, any tips? Am I ok to bring in my own conditioner do you think? Should I go in with wet hair? Lots of questions!
I had breast cancer in in my right breast in 2017, when I had a lumpectomy, licap and radiotherapy therapy. It has returned with a vengeance. I was diagnosed 18th September, in my right breast again, so I've gone flat and have since discovered that it as leapt to my left breast. I am starting chemo on Thursday 19th. I'll be going flat on the left side after the chem has finished and probably having radiotherapy, depends on the chemo results.
I am nervous but do want it to start. 😀
I take mine everyday morning and night at mo. But if you feel anything is amiss check it then too.
Great news re your CT, I don't think my trust do that. I'm a second time timer, was 29 when first went down this road and I didn't have CT then either. I had 6 x FEC, this time 14 years later just had the first of 3 x EC then 12 weekly lots of paclitaxal.
Love the bulb idea that's a great way to celebrate, I may have to copy lol.
I had a feeling you weren't feeling good.
I did have FEC and I hated it. It was August when I had it first and I remember sitting outside in sun and dithering, I was sick only once and then felt really sick fot prob the first 4 or 5 days. I remember my head being so fuzzy I couldn't concentrate. My mum in law came round and was chatting away and as just wanted her to leave as I couldn't create conversation. I also was shattered. Just make sure, as you are you doing monitor everything, and tell your onc, as they changed my anti sickness and I still felt sick but not quite as bad. After my first one I tried to eat little and often, quite often it was crap, but it helped with the nausea. All that said after 6 doses I said never again, but time wears on and here I am again. Like having a baby (although I've only got 1, I would have had another if it wasn't for the miserable hubby).
Just listen to your body and rest, you are already on the up if you've managed to get on here.
Thinking about you, and as Shi says these forums are amazing for support as we are all going thru it and there is usually someone who has been in the same boat.
You have to think you are a bit nearer the end than the 9th, that will get you through.
it will be fine. Such a lot to take in. Re all the side effects, they explain all of them but not everyone gets the same. It’s very individual. What affects one doesn’t affect another
Id recommend getting a few things in place before you start, just to have them in case.
accurate thermometer (I check my temp every morning, and my weight) senna tablets, Imodium, Rennies, gaviscon, soft toothbrush, mouthwash, hand/body cream, etc
in sure there was a list on tips page
you just have to go with the flow and listen to your body, and any change or small side effect, let your team know.
best of wishes for your first session.
I’m now on day 10 of my first cycle and am surviving. Had some down days but now the fog is lifting and I had a good day. Hoping for no more dips until next session but for me, it’s definitely taking one day at a time
Hi Charlotte, I had reduced dose for 2,3,4,5 and 6 as first one floored me, for me I wanted to do all I could so at least I knew for me I’d given it my best shot but I wanted to run for the hills after the first one but strawberry blondes mountain lion story on here helped give me hope and inspiration along with so many amazing people on here who reached out 👭👭 and gave hope and inspiration too it helped see other threads reach end of chemo and kept us focused 👭👭 listen to your body, rest and sleep as much as it needs, keep your fluids up and do it your way and give yourself a treat a day 👍👍whatever makes you 😁 if you need a 😢 or a 😤then let it all out, everyone just gets it on here ❤️ Friends will mean well but unless they have been through it, they will never fully understand the way everyone on here does ❤️ I mean we shared 💩 tips and foof hair dropping out with total strangers 🤣🤣 it’s an unbreakable bond of support understand and believe it or not 🤣🤣😁 👭 remember everything is your choice, do discuss everything with your team ❤️💕💕✨✨Shi xx
Hi Shi did you ever feel you don’t want the next chemo cycle? I’ve done my injection which wasn’t as bad as I expected but I’ve also done the paracetamol before I get any aches 👍. You’re right I’ve been sleeping most of the day but I’m quite relieved when I’m throwing a pill box in the bin because that days over 😊, I’ll start writing my temps down for my tri-age call back.
thank you 💕💕💕
Charlotte ❤️ You are doing great 👍 it’s early days and so much to learn but you will settle into routine with checking temp, doing injections, bouncing all night long on steroids week and not getting much sleep but then catching up during the day, you just go with the flow and you’ll settle into your own routine with it 👍❤️ I thought of it as extra doctor on inside 🥊🥊🥊away at anything 👍👍 I did weekly graph chart day by day to keep track on when I’d done meds during the day and write my temp readings down during day on there too, it was useful when ringing rapid response could give times and temp reading to them to help assess bit more over the phone, but I always rang rapid response straight away and didn’t leave it, a call that takes a few minutes is always best to keep safe during chemo, it’s not like normal and you think oh I’ll have a paracetamol and ring tomorrow always ring them let them assess and get you safely through ❤️❤️You are doing great, you all are 😘💕💕✨✨Shi xx
Hi Shi I’ve rang the Tri-age team and told her everything I have to do temp every few hours and they’re ringing me back in 24 hours 👍. Today has been my worst day tbh, I’ve got white blood cell injection to take but they said do them before bed time about 10ish, I just feel all these drugs I’m taking are making me worse 😟. They said they may reduce the chemo dose for my next one once 👍. Thanks for telling me to ring 💕💕💕
Just reaching out to send you our warmest hugs at this challenging time.
Please remember that you are not along, even if sometimes it may feel like it. Our team is right here and always happy to talk things through at your own pace. You can reach our breast care nurses on freephone 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm).
Sending all our love
Charlotte do please ring your team and let them know about your temp, you have to watch out for low temp as well as high temp during chemo ❤️❤️Please keep safe 💕💕✨✨✨Shi xx
Feline ❤️ So glad you’ve shared on here it is emotional rollercoaster and you just have to hang on and hold on tight 👭 please do speak to your team and also on here ring the number there is always ear and support a call away. Try putting hair into ponytail and cutting like that you should end up with neat Bob. If you are fec or ec hair was gone after 2nd infusion and I’d clippered off by day 14 just to some control back and it was difficult but liberating too as it was in my control. Get your make up on though, I didn’t and looked like action man rather than rocking a Carla delevigne like she did when she clipped her hair off, step by step be kind to yourself you are doing amazing ❤️💕💕✨✨Shi xx